Until 1996 I had very little acquaintance with prostatitis, personally or professionally. While working on assignment in Tennessee I had a day of very frequent urination, every hour or less, and some difficulty passing urine. I didn’t think of infection since I did not have burning or pain with urination. The symptoms seemed to improve over the next few days.
When I returned home I started noticing some burning pain during and after intercourse which might last for several days. Then I began having “spells” at night when I would have the shaking chills, trembling, and my temperature would DROP below 96 degrees. I would get in the tub to warm up which would help. During one of these episodes I felt so horrible I told my wife if I had died then I wouldn’t be surprised. I felt “all gone” inside.
Subsequently I saw my local physician who did blood cultures (which were negative) and prescribed intravenous antibiotics which I received each day in the Emergency Department while continuing to try to work. Urinary symptoms were minimal at this time.
My next assignment was to fly January 1, 1997 to Flagstaff to cover a position there. The drive from my home to Seattle was a nightmare, the roads covered with snow and ice. NOW I began having severe urinary burning and urgency. I had to stop and get out under a freeway overpass to pee. Finally we made it to the airport and on to the plane.
On the plane I began to have severe pain in the perineum, the region behind the scrotum. I took a pain pill and was able to sleep on the plane. On our drive from Phoenix to Flagstaff I had to pull off the Interstate highway to pee; fortunately this time is was dark. When we arrived in Flagstaff someone helped carry our luggage up to our second floor room. I couldn’t have done it. I took another pain pill and tried to sleep.
The pain was so severe I was unable to rest and so my wife took me to the Emergency Department. They took X-rays looking for a kidney stone and found nothing. The next day I was like a Zombie as I tried to work. Finally I had to call it quits. The hospital was forced to find someone quickly to cover for ME.
I was in a world of hurt and so my wife took me back to the hospital in Flagstaff. They did a tagged white cell study and other tests looking for a site of infection but without conclusive results. I was seen by a urologist there who made no diagnosis but who told me: “You can just lay there in bed in pain or get up and get on with your life”. I told him “I only wish our positions were reversed and you were lying here in pain and I could give you the same advice.”
I finally improved enough to fly home. That began repeated of episodes with mild urinary burning, then frequency, and urgency finally progressing to the point where I could no longer pass urine and had to use a catheter. During one of these obstructive episodes in April of 1997 I was admitted to Virginia Mason Hospital in Seattle. They looked in my bladder and performed other tests. They also decided that it must be prostatitis.
I told them if that was what was making my life so miserable, and keeping me in bed, why not take the prostate out? They thought that was a crazy idea! So much so that they sent a PSYCHIATRIST to see me – surely this must be some kind of weird sexual problem. After all, why would a guy want his prostate out? (So I could get on with my life!) The psychiatrist concluded “I see there is really something going on and that it is ruining your life. I hope they find out what it is!” Now that was a vote of confidence.
I was seen by a urologist at the University of Washington, their expert on prostatitis; he has even authored textbook sections on prostatitis. It was very hard getting down there. I was so weak I had to lie down in the van. We had to stop twice so I could pee on the 70-minute trip. His opinion was that you could only diagnose prostatitis if a massaged semen specimen was positive. He told me that before he would see me I would have to be “off all antibiotics and pain medicine for six months!” Then he added: “But it’s not time to go out and get a gun and kill yourself!” Those were his exact words. What a compassionate attitude!
All of this settled down into a pattern. As long as I was on some kind of antibiotics, I seemed to be able to get by. Bactrim seemed to work at times, so did Doxcycline and Augmentin. But when the chips were down, and I was having severe symptoms (up every hour at night to urinate), high-dose Levaquin seemed to work the best. But it took many weeks for the symptoms to subside. Levaquin made me jittery, made my ears ring, and gave me trouble sleeping but it was worth the side effects. I hated being on it but couldn’t get off of it!
Going off antibiotics I might get by for several l months, or only a few days before the symptoms worsened again. Worst was the obstruction of urine flow. That was very distressing and I never knew when or where it might happen so I had to have a catheter available to do self catheterization when needed. It was painful for me and I began having bleeding afterward. The urologist in Seattle said it was “easy.” I noted that he did not demonstrate the technique on himself!
Finally I saw my local urologist who performed a “TURP,” hollowing out the center of the gland so that even when there was swelling the urine could still flow. That was a big relief. Now during the bad times of pain, frequency, urgency and burning my urinary stream might slow but would not stop.
These spells and the battle continued from 1996 through 2007, a lot of trouble and a long time. In the meantime I still had to work and be a husband and father. Sometimes it was a real struggle. My wife did a lot of research on the internet. It turned out that prostatitis is VERY common. I found lots of other men suffered like me and also were often told they were “crazy” or suffered abuse at the hands of their doctors who just couldn’t seem to understand what was going on. There is talk of some patients being “addicted” to antibiotics. That’s a weird one! I would have loved to be off them if I could.
Some sufferers went all over the world for help. There was the doctor in the Philippines who would “massage” your prostate daily for weeks. Then there was the doctor in Italy who would inject antibiotics into the prostate over a number of weeks. I didn’t have the time off or money to spend weeks in Asia or Europe.
Then my beloved wife ran across the name of a physician in California who did the prostate antibiotic injections, like the doctor in Italy. Now that was something we could do! We flew into a lovely town: great shops, great restaurants and a beach. The doctor was caring and compassionate. The injections were minimally painful and covered gram negative, gram positive bacteria, fungus and included anti-inflammatory medicine. This covers the bases in a disease which is still poorly understood.
The injections helped! Actually I was off all antibiotics and did quite well for a year until the symptoms began to return again. I went for another injection in hopes that this would help, but within weeks I was worse again and had to start on Levaquin once more. Ugh! The doctor told me right up front that the injections provide about 75% relief in 75% of patients. My case just happened to be so long standing and resistant I ended up in the 25% of patients who fail the injections.
So everywhere I went, I would have to carry Levaquin with me, because I never know when the symptoms would recur. My daughter had been attending college in Tennessee but last year she switched to a college near Napa, California. My wife and I flew to Atlanta drove to Chattanooga, picked up a truck to carry her stuff and tow her car back to Seattle. We drove 2700 miles in the few days that I could get off from work. We both arrived home very tired. I hoped for a good night’s sleep to be up the next morning to chair the Tumor Board at 7 o’clock. During the night I began to feel chilled (oh no, hopefully it’s the flu!). But then the fever, urinary urgency, frequency, burning and pelvic pain started. I was up every hour from midnight on. I started Levaquin again, and tried to sleep.
I attempted to chair the Tumor Board the next morning but had to leave in the middle of the meeting. I was feeling so wretched! How embarrassing and how frustrating! I had gone from feeling well when I went to bed to horrible urinary symptoms and a 103 degree fever in one night. Something had to give. I just couldn’t go on like this.
Then it happened that my wonderful wife, who just won’t give up, while surfing the internet for help found Dr. Krongrad’s site. I just felt too depressed to surf for myself! Amazingly, he would actually consider removing the prostate glad to treat severe chronic prostatitis without thinking that I must be crazy or addicted to antibiotics as they thought of me ten years ago. Fortunately times change and some doctors can learn new treatments!
I had one week off coming up with someone to cover for me. Dr. Krongrad was gracious enough to see me on Sunday before a trip and operate on me Wednesday after his return. I was in the hospital for one day and then recovered in a motel room through the weekend.
I flew home on Sunday with a urinary catheter and leg bag. The flight was not as bad as I had expected. I had to be back at work on Monday to care for my patients. That was a tough day/week. I made it through with occasional pain pills. Thankfully the pathology report did not show prostate cancer but DID show evidence of acute and chronic prostatitis.
Following surgery, I had quite a bit of pain where I sat down [transient perineal pain is common after prostatectomy] and in the tip of my penis. But I had these things before surgery. Considering how severe they had been, and how long they had been that way, I didn’t expect it to all go away in a day, but I did have hope (I think it’s just great that Dr. Krongrad’s secretary is named Hope)!
I am just a few short weeks out from my prostate removal. Day by day, week by week my symptoms improved and my strength returned. The catheter came out without any problem. Following that I was incontinent of urine but I learned to manage that with absorbent pads [incontinence worsens with fatigue, which increases with hard work; Dr. Muff gave himself no rest at all after surgery]. Now, just as Dr. Krongrad predicted, I am regaining continence and an ability to generate a urinary stream. More importantly, I am able to achieve an erection sufficient to make love to my wife. Hey, at 64 it wasn’t working 100% before the surgery!
In summary, the prostatectomy Dr. Krongrad performed cured my prostatitis symptoms. I have:
I feel well and strong again. I am able to work, care for my family, make love to my wife, and enjoy life free of pelvic pain and urinary symptoms. For me, that is actually a miracle!
Prostatitis was never in my head! I can look forward to retirement and travel without carrying Levaquin and a catheter! I often feared I might die with or of this disease, but now I can LIVE without it! If only I had known years ago!
If you are suffering from symptoms of chronic prostatitis, give Dr. Krongrad’s office a call or email. The sooner the better! You will get a prompt response!
Thank you, Dr. Krongrad for your sensitivity, for being willing to dialogue by email before surgery, and for the wonderful relief that I have had following surgery. God bless you for helping men in a dark place!
Nick Muff, MD
Director of Radiation Oncology
North Puget Cancer Care Center